Better Business Bureau

Charity Contact Information BBB Wise Giving Alliance Comments Programs

Tax Status Governance Fund Raising Financial

Name:	Cystic Fibrosis Foundation
Address:	6931 Arlington Road, 2nd Floor
	Bethesda, MD 20814
Phone:	301-951-4422 800-344-4823
Web Address:	www.cff.org

Cystic Fibrosis Foundation (CFF) meets the 20 Standards for Charity Accountability.

To advance the search for a cure, CFF's drug development program, through a matching-awards program with biotechnology companies, and a specialized CF clinical trials network, has attracted industry involvement in CF research. CFF manages a virtual drug discovery and development pipeline that they report includes more than 30 potential new CF therapies. CFF accredits 115 CF care centers nationwide to provide multi-disciplinary, specialized care for people with the disease. Cystic Fibrosis Services, Inc., a CFF subsidiary, was established as a specialty pharmacy for people with CF to provide availability and access to CF medications, as well as assistance with the insurance issues faced in obtaining these medications. Today, CF Services provides personalized services, patient advocacy, patient education and reimbursement support to the CF community. As part of its education efforts, CFF provides free information through its website, publications and videos for the general public.

For the year ended December 31, 2009, CFF's program expenses were:

Medical programs	181,576,864
Public and professional information and education	18,470,716
Community services	7,282,441
Total Program Expenses:	$207,330,021

Chief Executive : Robert J. Beall, Ph.D, President and CEO

Compensation*:

$740,057

Chair of the Board: Catherine C. McLoud
Chair's Profession / Business Affiliation: CF parent and hospitality industry consultant

Board Size: 17

Paid Staff Size: 540

*2009 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:

Direct mail, telemarketing, special events, grant proposals, Internet appeals, planned giving, and cause-related marketing.

Fund raising costs were 15% of related contributions. (Related contributions, which totaled $118,300,466, are donations received as a result of fund raising activities.)

CFF incurred joint costs of $10,185,000 for informational materials and activities that included fund raising materials. Of those costs, $7,272,000 was allocated to fund raising expenses and $2,913,000 was allocated to program expenses.

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on CFF's audited financial statements (consolidated) for the year ended December 31, 2009.

Source of Funds
Pharmacy services	96,196,306
Special event revenue	78,350,718
General contributions	39,949,748
Other	2,240,980
Investment income	800,439
Total Income	$217,538,191

Uses of Funds as a % of Total Expenses

Programs: 89%  Fund Raising: 8%  Administrative: 3%

Total income				$217,538,191
	Program expenses			$207,330,021
	Fund raising expenses			17,505,771
	Administrative expenses			5,986,634
Total expenses				$230,822,426
Expenses in Excess of Income				(13,284,235)
Beginning net assets				142,418,315
Other Changes in Net Assets				(3,061,364)
Ending net assets				126,072,716
Total liabilities				58,786,399
Total assets				$184,859,115

Note: In the financial section above, "other changes in net assets" represents -$3,061,364 for net nonoperating investment losses.